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  • Eli Stuart (they/them)

Sustainability: Listening to Your Body (Care Work)

Updated: Jan 20, 2022

(Image Description: Cover image is of the cover image on the book "Care Work: Dreaming Disability Justice" by Leah Lakshmi Piepzna-Samarasinha. The background is white, with some of a trunk of a white tree (may be birch, may not be) with grey markings and shading in the bottom left corner. The roots point up and out starting near the bottom middle of the cover. The outreached roots have some small, light green leaves on them. On the left side, an brown arm reaches over, leaving the palm on the tree trunk. On the right, a leg of the same color is seen, with the top of the knee being visible and the calf being to the right of the roots. The top has in bolded, all caps, and purple text the author's name: "Leah Lakshmi Piepzna-Samarasinha". Below that, in large, bolded, all caps, and green text is the title "Care Work". In between the words "Care" and "Work" is in small, bolded, all caps, and purple text reading "Dreaming Disability Justice" which is also a part of the title).

Reading about Leah Lakshmi Piepzna-Samarasinha (she/they) having fibromyalgia and talking about her pain is something that really resonated with me. Fibromyalgia is not something I find talked about a lot in general. However, the more important part is how pain and fatigue works with people’s every day life. They said how, when waking, one thinks “ bad is my pain, how shaky is my balance and my cognitive ability today? Yet another fibro morning,” (180). Fibromyalgia is a chronic illness that causes widespread pain and fatigue as the main system but also can cause difficulty focusing or “fibro fog”, digestive issues, etc. It’s lifelong with no simple cure or answer. Some things may help ease the pain, but entirely getting rid of? That’s not really an option. I don’t mean that in a pessimistic way, it’s just the truth.

But with fibromyalgia existing in my life 24/7, 365 days a year, it impacts everything I do. It isn’t easy to ignore, or for me to ignore. The problem is, the world does not see that. The world sees disabled and fatigued as lazy. In our economy and society “Capitalism says that disabled, tired bodies that spend too much time in bed are useless (181). This causes undue pressure and stress on disabled people. People push themselves to the breaking point, to feel broken down to avoid “becoming useless”.

Piepzna-Samarasinha discusses how she got pneumonia, leading to her not flying to LA, and instead, they asked to do the event virtually. However, to do so was difficult as they say “I listened to my body, but I had to fight to do so”(187), with them reaching out to other friends who are also disabled and/or sick to get that reality check that flying soon after getting pneumonia is not good for her body or general well being.

I had a multi-day migraine last week. When it started coming and I got meds I wondered if it was me overreacting. It wouldn’t go away later after more meds and dark rest and ice packs, but I couldn't let that stop me; I had a test the next day. “I’ll be better after I sleep,” I told my Mom, “I’ll definitely be at school tomorrow”.

After little sleep due to the intense pain and waking up in pain, I gave in and went to the doctor and spent the next 2 or so days medicating and trying various remedies. It was not fun and stressful knowing I had work that I had to get done but couldn’t at the time. I took care of myself, but it wasn’t easy.

Piepzna-Samarasinha also talks about doing the work you like, the activism and advocacy, the art pieces and performances, still takes a toll on you. Doing tours like Piepzna-Samarasinha requires forethought and time built in for you. One of her essays in this book does address exactly what they do in terms of things to bring or ways to take care of yourself such as heating pads, medication, rest, etc. Being able to do such work isn’t usually sustainable. The fact is that “We don’t have a model of touring that includes disability and illness, canceling and rescheduling, that seems like something other than a luxury, or even possible” (190).

Focusing on sustainability is hard in such a world that sees capitalism as the fair answer and does not see (or does not care to see) the ableism rooted in capitalism. Living long lives and lives that take care of our body and mind is important, so the little things that you can do (ie: rescheduling something because it’s a bad pain day, etc) is a start on pushing for disabled sustainability and well being. One of the essasies (the main one I’m responding to in this article) is called the “Prince, Chronic Pain, and Living to Get Old”, with the “Living to Get Old” part relating directly to the sustainability of ourselves.

Piepzna-Samarashinha, Leah Lakshmi “Care Work: Dreaming Disability Justice” Vancouver, Canada: Arsenal Pulp Press, 2018. Print.


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